volunteering for drug trials

[PygmyPlaidGiraffe]

I have never fancied giving myself over to research while I am alive and healthy. When I was down and out for a time I was never offered an opportunity to participate in a drug trial. If desperate enough I suppose I might have seriously considered participating. Also, at the time I was not in need of access to any drug treatments.

More and more individuals are participating in drug trials as a source of income. These individuals may be lower income or homeless. I have seen news documentaries about individuals that are participating in several trials a year, and sometimes the trials overlap. Many people participating in these examples were not in need of access to a drug treatment for physical or mental reasons.

I imagine most people that participate do so because they can not afford treatments.

Most stuff that is reported in the news is reported because it is news, it rarely happens. The articles I have read and the documentaries I have seen do not seem to indicate that these examples are the norm in the pharmaceutical industry.

Has anyone on this forum participated in drug trials (for financial reasons or for the access of a treatment), designed a drug trial, or administered one?

Are there other reasons a person may participate in a drug trial?


http://www.cbc.ca/stories/2003/03/18/Consumers/drugtrials_030318

 

[PygmyPlaidGiraffe]

It's unclear who is responsible for informing patients in clinical trials — Health Canada, drug companies, the person's doctor or the organization sponsoring the trial.

- from the article I read, liked above



What is the norm? DO people usually get enough information before commiting to a drug trial? If not, is it a growing problem or are media reports giving the public the perception that more and more pharmaceutical companies push the limits of laws and regulations?

Are a lot of companies moving drug trials to countries with poorly developed regulations?

I have so many questions but not enough background to answer these questions.

PPG

 

[tim]

I have never fancied giving myself over to research while I am alive and healthy. When I was down and out for a time I was never offered an opportunity to participate in a drug trial. If desperate enough I suppose I might have seriously considered participating. Also, at the time I was not in need of access to any drug treatments.

More and more individuals are participating in drug trials as a source of income. These individuals may be lower income or homeless. I have seen news documentaries about individuals that are participating in several trials a year, and sometimes the trials overlap. Many people participating in these examples were not in need of access to a drug treatment for physical or mental reasons.

I imagine most people that participate do so because they can not afford treatments.

Most stuff that is reported in the news is reported because it is news, it rarely happens. The articles I have read and the documentaries I have seen do not seem to indicate that these examples are the norm in the pharmaceutical industry.

Has anyone on this forum participated in drug trials (for financial reasons or for the access of a treatment), designed a drug trial, or administered one?

Are there other reasons a person may participate in a drug trial?


http://www.cbc.ca/stories/2003/03/18/Consumers/drugtrials_030318

Hi PPG
My wife has just volunteered for drug trials. She wouldn't pretend that money has nothing whatsoever to do with it - a little extra cash is always welcome - but we are financially secure, so there is more to it than that. In the UK our health facilities are free at the point of treatment, so it isn't the need for treatment. She works in the maternity ward of a hospital and seems to be motivated by a sincere desire to be of some service to the community.

 

[spoonhandler]

For patients with cancer, participation in a clinial trial may be their last option. In early stages of testing, patients may only enrol if all other accepted treatment options have been found to fail. Once issues of toxicity/side effects have been answered, randomised, double-blind, placebo-controlled trials are favoured. This means some patients will not receive active drug - however, studies have shown patients involved in a trial, even in the control arm, have a better outcome than patients who do not participate.

In Australia at least, I understand volunteers in trials are not paid to participate, but travel costs are reimbursed. There may be a nominal fee offered as recompense for time, but I think this is usually offered to those agreeing to take part in survey-type studies rather than drug trials.

 

[Byzantine Magpie]

People get paid to take part in drug trials? Wow! Don't people do things because *it's the right thing* any more?

But then again, here in Oz we don't get paid to donate blood either. I was a blood donor for about 15 years, and did so because it was a simple way to help other people at little cost to me, and because it got me a couple of hours off work every three months.

Anyway, I'm currently taking part in the trial of a drug for Crohn's Disease. In order to take part, I had to read some information provided by the local Department of Health. One point in the information was that I may well not benefit personally from taking part in the trial, but that my participation may help others. Well, which public-spirited individual wouldn't want to do something to help his fellow citizens?

Obviously, though, there is the personal side to this. The drug being trialled is quite expensive, but taking part in the trial means I receive it free. OTOH, I still have to take the other drugs I use to control the condition, so it's not as though I save any money by taking part in the trial. Instead, once a month I get an afternoon off work while they drain the new drug into me, so I take the opportunity to have a bit of a snooze when I might otherwise be working...!

 

[sadluxation]

In the UK there are several bodies that decide on who should and can take part in clinical trials.
They usually are in several stages, Stage 1 being the highest risk category and is a marker for safety and risk after animal studies have been taken.

There is a move by the World Medical Association to tighten up the rules, which were based around the Helsinki Protocols, the now, Declaration of Human Rights.

An article I found on the BBC website can be found here

In the UK participants do get paid, and I have seen posters around my university calling on students to take part. They are obvious targets. But all participants have to be well informed of the risks of the trials and can drop-out at any time without warning, but their records are kept for statistical analysis of the trial.

I also found this website:
Covance


I personally think that money could be a large deciding factor in vunerable or poor people.

I also give blood, for which I don't receive renumeration, but apparently in Oz, you get quite alot of food to make up for it. We only get tea, crisps and biscuits.

 

[PygmyPlaidGiraffe]

I also give blood, for which I don't receive renumeration, but apparently in Oz, you get quite alot of food to make up for it. We only get tea, crisps and biscuits.

Thanks for responding everyone. It appears the reasons why people may participate are diverse.


I am In Canada and I have not received renumeration for giving blood besides juice and a peanut butter or chocolate chip cookies. We also get an "I am a blood donor" wallet sized card that identifies the individuals blood type.

Canada's blood bank has traditionally been under-supplied. Its had major financial problems, steeped in controversies, and shocking discoveries have resulted in the Canadian blood bank system being overhauled.

Not too long ago the blood bank was partially stocked by blood from inmates in United States (a high risk group. if there ever was one!).

It makes me wonder how far behind Canada is compared to other developed countries when it comes to regulations and practices of safety.

Some great risks to the public have been exposed over the last decade or two. The Red Cross, I think, has no involvement anymore with the Canadian Blood Bank.

 

[spoonhandler]

sadluxation wrote: "I also give blood, for which I don't receive renumeration, but apparently in Oz, you get quite alot of food to make up for it. We only get tea, crisps and biscuits."

When I was allowed to give blood, all we got was tea or weak cordial and biscuits. I'm not aware of anything more substantial than that, but are there any current Aussie blood donors who can tell us what food rewards are now on offer?